Being careful

Although I am now in a really good place with my Ledderhose I still have to be careful. For those that aren't sure I am not "cured" for lack of a better word the condition is in remission. The pain has gone and I no longer need a walking stick, I am running and for the most part I don't think of the condition any more. 

There are however a couple of exceptions to this and they are more of an annoyance although also a constant reminder and something that makes me remember how important it is to help patients that are in the position I was a couple of years ago. 

1) Hitting the arch: The lump, although significantly smaller, is still there and direct impact on it can be painful. For example I was walking down the stairs the other day and I stepped over the baby gate and slightly misjudged my step and this resulted in me bashing my arch on the bottom step. This bashing was incredibly painful and significantly more that had I done the same thing on the other foot. Of course I could wear trainers all the time but with the little one running around I would rather not risk treading on her toes. 

2) The orthotics: Buying new shoes is a real pain I have wide feet and the orthotics are obviously wide to cater for that but also they add depth so I have to get shoes that have the height to fit my feet (which are also fairly tall, think brick shape) and the orthotics. 

3) I am still wearing the orthotics. Not sure if I could get away without them and is something I am considering trying as I have so little pain at the moment. The aim of the orthotics now is to try and get me to walk normally rather than on the outside of my foot as my body learnt to do that whilst the foot was bad. 

Don't get me wrong I am not complaining however there are still things that need to be catered for.   

How was the holiday for my foot?

As I have made aware I went on holiday recently and here are some of the things that happened in that time that I felt were worth mentioning because they related to my foot.

Cottage we stayed in

1) I still really have large limitations.

On the Friday before going away I needed to get a train ticket in my lunch break to ensure that I would not miss the train from having to queue. This is a 20 minute trip each way and 10 minutes standing for the queue to go, at the end my lump hurt a bit but my ankles were killing me. This was without the stick.

2) I still have to be careful about not stepping on things.

On holiday there was a shoe mat as it gets quite muddy outside. What I did not realise though was that this had quite a large lip on the side, I stepped on this with my bad foot and only just missed my lump, I still had to sit down for a couple of minutes to let the pain ease, if it had hit the lump who knows with how painful it was I might have cried!

3) Cold is not good.

As I mentioned just before going away cold is still not good, the floors in the cottage we stayed in got very cold (I am used to under-floor heating) therefore my feet got cold when out of my thermal socks, this meant my arch hurt but I really couldn't place the pain in the lump as much as I cold last year.

I think that is everything that springs to mind, thanks again everyone who gets in touch, over the holiday I was contacted by 6 people (some old some new) and it was really nice to get those messages. I have also noticed a slight increase in the number of Google +1 clicks the site has had (the little red +1 button on the right) which is great. 

A sad but necessary step

I just don't know what to do with myself. I am in so much pain at the moment that I am struggling to do anything. Just getting up in the mornings and cleaning my teeth, shaving and showering etc makes my foot hurt a lot. I should rephrase that really as on days when I have not been at work I am normally ok first thing as I have not had the previous build up of pain.

Work has become almost unbearable as I am not able to control or cope with the pain that is created when I have to stand and walk so much. Things that are essential for my work such as going to a machine that I  need to use multiple times a day are now almost reducing me to tears and something has got to give.

Well yesterday something did give and I had to bite the bullet. I had a chat with the boss and gave in my notice at work (for lack of a better way of putting it) and I will only have to cope with 2 more weeks of pain before I can concentrate on finding a desk job with which to replace it.This was one of the hardest choices I have ever had to make, I have put a lot of time and effort into the current course that I am on and effectively I will be leaving with nothing to show for it, well lots of new skills, experience and a wife of course. 

It was hard not only because it is going to be hard on us as this means some financial strain but this is going to be far outweighed by emotional and physical pain that not only am I suffering from but also my wife (at least in terms of emotional pain) from seeing me hobble across to the bus stop in the mornings. But of course we are not the only ones that are going to suffer from this. The lab I am working in is going to have a shift, the project I am working on is going to have to have someone take it over so I am going to have to try and make this as smooth as possible for them all by writing up and presenting everything that I have in a manner that makes things as easy as possible for someone else to follow. 

I hate having to do this but that is the issue that I have to do this because there is nothing that can be done about the pain, even when I get another job, getting there and going to the toilets etc is still going to give me pain but I am not going to be expected to be on my feet and to walk as much as I am now. Despite what some people think my current jobs does require a lot of walking and a lot of standing and this is something that my foot cannot cope with. 

This is something that I have not taken lightly, I have toiled over this choice for some time, I have run it by friends and family and the most comforting thing that was every single one of them thought that this was the right choice now, not one of them thought it was the wrong thing or that I was crazy and I trust each of them to put me in my place if I am being stupid about something. 

What am I hoping for from this? Well if I end up being at home for a little bit my foot get some much needed proper rest and I can stop worrying about the fact that I feel I am not working hard enough and that instead of being able to leave in hopefully some sort of positive manner like I hopefully am, I feel that if I let this continue I would be letting things get into a place where I am putting myself in a bad light by not leaving earlier. Hopefully I can get that job that requires not standing or walking and ultimately I am going to be happy. 

So that is my post for today, not a great thing, it is an awful thing but hopefully it will be a break through. 

Continued Pain after radiotherapy for Ledderhose

I wrote last week about how my foot has been bad since about a week after I finished radiotherapy and this has continued into this week (yes the capital P in Pain in the title was intentional). The pain is bad and some people are starting to realise just how bad whilst others are obliviousness and the GP was as ever unhelpful.

I went to the GP this morning to get some more co-codamol as this is the on thing that seems to take the pain away even though that is by sending me to sleep. Still it means I can take it in the evenings and I don't have pain getting to sleep. So I went to the GP, this is the same GP that refused to give me pain killers last time when I was on nothing that helped.

So I went in and explained that when I was at the foot specialist last time I was given some stronger pain killers and that although these help I end up asleep and I can't take them at work. I then went on to say how at work I am in a lot of pain and I can't take the pain killers. He just gave me a prescription and sent me on my way. To be honest I was happy to get out there with more pain killers given what happened last time. The thing was though he just didn't seem to care, he didn't acknowledge that I was using a walking stick, he didn't show any sympathy for the fact I am in a lot of pain at work and made no suggestions and didn't offer to try different pain killers and I thought Doctors were supposed to want to do whatever they can to help?

Anyway I am in continued pain from last week, I am struggling to walk and therefore struggling to do my job but for the moment at least I am going on in hope of seeing some benefits from radiotherapy which can't come soon enough. I was regularly close to tears on several occasions today, this is something which can't gone on and I am going to to have to book an appointment with an alternative Doctor to see if they have any better ideas or at least will listen to me. 

On a positive note I was left a really nice comment on my last post today. People leaving comments saying that this blog has helped means a lot as that is the main reason for me doing it. Thank you to anyone who has left a comment and indeed to anyone in the future who leaves one.

Sam said:

"I just wanted to say thanks for having this blog, I was recently diagnosed with plantar fibromatosis and the amount of information in regards to dealing with this disease is very minimal on the internet.

I was prescribed verapamil ointment which I rub on my lump twice a day, have only been on it for a week now but have high hopes this helps as the other options in America are lacking. It seems straight up radiation treatment isn't even offered in the US, only after post-surgery. Anywho I will be watching and hoping for good news on your progress"

The post radiotherapy pain

I am not into my second week of work post radiotherapy and I was saying last week how things were going and that really I was just waiting to see an improvement but that is not how things are at the moment.

This week has actually been one of the worst weeks that I have had in terms of the amount of pain that I am suffering from on a day to day basic from walking and standing. At work I have regularly nearly been in tears from the pain of walking around, this has not been helped by one of our cold rooms breaking so I have to travel 10 times as far to get some stuff. I also had to hand in a form which meant walking to another building and then there is the normal regular day to day stuff that I have to put up with on top of that. 

I am coping but only just. I am not sure what to do. The pain is intense and I hate to complain and moan all the time (sorry to those that I am complaining and moaning to) but I guess I am just going to have to try to keep on hoping that I start to see an improvement and keep collecting as much information as I can to help as many other people as possible whilst trying to minimise my walking and standing. 

The problem is that there are things that I have to walk and stand for and it is not just standing for an hour it is getting up every five minutes and then standing for an hour and if nothing else it gets you down and really makes you not want to stand up. Then again this week the pain just seems to be getting worse and worse, I guess the best way of explaining it is that on Monday it hurts say 9 at midday and then Tuesday it will be like that at 11am and then Wednesday 10am etc so it gets progressively worse throughout the week and it is getting to the point where something has got to give as it continues to hurt a lot when I am seated.

I am not the only one that has this kind of problem though. Although slightly different I have been reading on the Dupuytren's Society forum where someone who is having radiotherapy for Dupuytren's is suffering from increased pain and the thing seems to be hoping that it is the storm before the calm. 

I do have a mostly nice and relaxing weekend planned of sitting on the computer, watching sport, cooking a cake and then taking that cake to my parents for my sisters 21st birthday party and maybe it will help to take my mind off of my foot if nothing  else. 

Have a good weekend everyone. 

Hopefully the cake will look a little something like this: 

1st week back after Radiotherapy

As I mentioned on Monday this week was my first week back after the 1st week of radiotherapy for my Ledderhose disease. As I have commented on before last week (the week of my radiotherapy not the week at work) was relatively good in terms of pain and I was hopefully that this was the radiotherapy helping me much quicker than was to be expected but it was just me being off of my feet.

How has this week been, well as I mentioned on Friday I have started to see changes in my foot. I now have a darker patch where the radiotherapy was applied and this is kind of nice as it shows that although I could feel nothing in terms of pain there was something going on whilst I was laying on the table.

I have now been back at work a week

How was that week? Well in my personal life it was great I am in a really good place there and I am learning lots of new things and some of my hobbies are keeping me happy when the Mrs is out teaching.

Work though was demoralising from the foot point of view. Imagine that you have been off of work for a week getting treatment for something that causes you a lot of pain in your foot, not only have you had to save up the money to get this treatment (thank you everyone) but you are having to travel for several hours everyday to get. You know that this treatment is not supposed to help immediately but you are feeling a little bit better during that week but it could be because you are off of your feet much more than normal or it could just be because the treatment is working. After all the lump in your foot, in your mind at least, feels a litter smaller, though this again could be because you have been off of your feet so any size change due to inflammation is going to make it seem smaller.

So you get back to work and sure you are in pain but you think maybe just maybe it is not quite as bad as it was before treatment, maybe. But as the week progresses you are sure it is not better if anything your foot is feeling more sensitive and you are maybe actually in more pain than you were before the week of treatment but realistically it is about the same. How would going through that make you feel? Because about my foot that is how I am feeling right now.

Still for those that don't know it is a long weekend here in the UK, a 4 days weekend to celebrate the Queen's Diamond Jubilee. I have been making the most of this by not doing too much yesterday apart from going to a BBQ in the evening which was very nice and today I am going to my parents for dinner and a game of cards. Tomorrow my wife is doing another 10km run as part of her training towards the marathon at which she is hoping to raise money for the British Dupuytren's Society.

I mentioned last weekend about watching sports and I am about to get back to watching the French Open and I watched football yesterday so I guess not much has changed in that sense.

First day back at work after Radiotherapy

Today was my first day back at work since having radiotherapy on my Ledderhose last week, for those who are new or are forgetful this was with Dr Shaffer at the Royal Surrey County Hospital in Guildford.

Just a picture of my bench at work. 

I have certainly learnt something for next time and that is that because of the travelling it was knackering and that despite not doing a lot at the weekend I still felt completely shattered this morning and think it is probably best that next time I take an extra day to recover but will have to see how I am feeling nearer the time.

Of course the important news is what is my foot like. Well the answer is that I am not sure, if doesn't really feel different (hasn't softened), it doesn't look any different (same size) and the pain is not any better although a little bit different. I'll explain further....

Normally I have a high level of background pain and a decent level of increased pain when I step onto it but today, whether by fluke from being off of my foot last week or because of the radiotherapy I am not in so much pain at rest however this does seem to be accompanied by a much sharper and more painful um pain when standing and walk. So overall it is not an improvement but different. This is not to say that there was no pain when resting, in fact there were probably more of the short sharp burst of really bad pain than before radiotherapy but then I didn't really quantify the pain.

Today I also seemed to tweaked something in my left ankle on my way back home on my way to the bus stop and I guess this was probably a result of me trying to be nice on my foot. This ankle has been really hurting all evening and I hope it clears up in the morning.

I am also now starting to run out of my pain killers that the foot specialist gave me when I went to see them. This means that I need to go to my GP and see if this time they will actually be helpful or not, I do't have high expectations my I am not sure what I am going to do if they don't give me more pain killers.

Hopefully I see some improvement soon and hopefully some good will come from spending the £2000 for radiotherapy other than just the huge amount of hope it is going to give me for the next 6 months. To be fair that hope is worth quite a lot of money but that would probably be negated by the depression of it not working should that happen...

I am not sitting down watching a program about pain...Should be interesting How to beat pain

Sports watching day!

I am now sitting in bed on a bright sunny Sunday morning and my wife is due back home after only having one lesson this morning and then she doesn't have another one until 4pm or there about. Don't get me wrong I am content today to stay in and watch the French Open (which I am at the moment) and then watch the cricket (which I will be in 10minutes and that will be on the laptop so I can have the tennis on muted) and then at 1pm the Formula One starts so will probably turn off the tennis and mute the cricket after they are back out from lunch, but at the same time as I think all of that is amazing I would also love to go out for a walk.

We live a matter of minutes away from the beach, I am tempted to suggest that we wonder down and sit in the sun for a little bit though I of course have to keep my trainers on and my feet protected from the sun. However my foot is not being nice to me this morning or indeed since finishing Radiotherapy.

I have not been on my feet much and think this is a rather ominous sign for going back to work tomorrow. I am hardly on my feet, hardly doing anything but I am in a lot of pain once I get going and this can't bode well. I don't know if it is the application of the E45 and this rubbing of the lump is causing some of the pain or whether it is just the Ledderhose putting up a fight before going away (fingers crossed).

Anyway a day of resting and sport watching should help cheer me up and only 4 hours of teaching for my wife means she can watch the F1 as well but more importantly it means that she is around.

Run, fun, shop, pain, sleep

This is my last post for the weekend and it is going to be about my weekend and how it went.

Firstly there was the run. The run was really good and everyone did such a great job. As I have said people run and people walked and gave out leaflets (I did get my highest number of page views for a couple of weeks yesterday) and people came to support as well which was really nice even unexpected people turned up.

There was a downside to the run, my foot. My foot was really hurting by the end of the run even though I tried to sit in a folding chair as much as I could and I had my stick out from pretty much the start of the day I still had to put more weight than I would like on my foot. Still it was amazing of everyone to get together and do all of this for me to get my treatment and to raise money for the British Dupuytren's Society.

Yesterday afternoon I set about sorting out the blog, I got rid or relocated a lot of the junk from the side of the blog which was there initially to get the blog up search ranking but now the content is more than capable of doing that. I have also updated the links and made it so that the blog now has more of a website feel but with the constant stream of personal updates. I managed to do one of my updates for the British Dupuytren's Society which is now awaiting review by them.

My evening last night took a bad turn though, whilst making dinner ready for my wife's imminent arrival my lump kicked off and I had to take my pain killers about 8pm, this led to me being drowsy from 9pm and I was happily snoring away by 10pm which even for me is a little early. 

This morning I could still feel where I had been on my feet yesterday morning but I then managed to make a shop for this blog. Well at the moment it only has two designs which are Gary's Feet and I have Ledderhose Disease. If you want me to make a design for you along these lines let me know and I will see what I can do. Who knows if you wear an "I have Ledderhose Disease" top then someone might ask about it and that is one more person who knows about it and you have helped to raise awareness.

Pain, wedding photos, contracture and more to come

I want to start today's post by saying that I am again in a lot of pain by the end of the day when walking and actually it took a while to go away even once I was sitting down. It really was quite bad again, probably the worst that it has been since I got the orthotics, is this the end of the orthotics helping or is it just a blip as I get used to walking again after 2 weeks off for the wedding.... I am sure it is the latter otherwise I am going to be in a lot of pain for a while to come.

We also got wedding pictures and they look great and I think that it really shows on our faces what a wonderful day we had and I actually remember thinking that my foot didn't really hurt that day but what the photos are telling me is that I just pushed that to the back of my mind as in all of the photos where you can see my feet my left foot is in its classic on the side pose and this does not bother me one bit as I didn't notice it on the day you cannot see any pain on my face which is just covered with love and happiness.

One of my best men from the wedding commented on how often when he asks me how my foot is I go "eh ok" and then he reads on here that in fact I was in a lot of pain that day. Well this is because it is really bad from about 3pm onwards. Something like shown in the graph below:

 I am tempted to start doing this on a daily basis and also take into account the amount of time I am spending on my feet so that I have accurate (albeit down to my own judgement) figure on this and can actually say "well this is what happens to me". Anyway I doubt I will remember how to do it let alone actually get round to putting it all together but I will try.

So onto the main topic for today: (I do have a second one ready on paper but no time to type it up so I have a post ready for tomorrow :-)  )

I came across this: Dupuytren's disease in the feet causing flexion contractures in the toes

I have to say that this is the first time that I have seen it referred to as Dupuytren's (DD) in the feet and it does explain what it is nicely for those who have heard of Dupuytren's which is much more common than Ledderhose. In this case study from 1996 they look at two cases where they observe that contracture of the toes. This is interesting as this is considered to be very rare in Ledederhose and is a trait that is much more linked to DD. Interestingly what they mean by this is actually curling of the toes rather than the lack of flexibility like I have in my toes as shown here video toes don't move.

Some things that I got from this paper / case report were:

• Both patients smoked - This has been linked to Ledderhose before but is not really been proven and is certainly not an issue in my case. 
• Both have a family history of the disease which again is not an issue in my case but I am however interested in the genetics aspect of this and I am in contact with several people who have a family history and I am hoping I will be able to compile these together. If you had a black blob for a person with disease and a white blob for a family member without disease then mine would look like a load of white blobs with one black one (in case you can't guess that's me). 
• Again they mention that LD is an uncommon manifestation as I have discussed before. They also say that it is most common in men in their 40s and 50s. 

As I said above I did come across another useful paper which is actually a review for DD and I will hopefully cover this tomorrow. 

Well I certainly hope that someone out there is finding some of my posts useful and I hope that they continue to follow and support this. I am looking forward to working my way through the book and all of the papers that I keep finding. 

Stupid boy today

Today was good on my foot. To start with I forgot to take the insoles off until the and my feet were ok and even come leaving from work they were ok. This gives me hope as I lasted eight until six which is ten hours without being in too much pain. This is important as I probably stood and walked more than will be required on the wedding day which might mean that come three weeks today I'll be ok.

The bad news is that I then put the insoles back on to get home and my feet started hurting and I don't think this was helped by me forgetting my keys so I had to mope round for over an hour before I had a key to get in but that gave me the time to write this. Annoying because I was going to get home and do some fresh veg for dinner but I guess frozen veg again. Lucky that yesterday I managed to be mobile enough to do most the housework so no need to worry about having to do that. On other exiting news my soon to be Mrs has made the fruit cake layer of the wedding cake. 

No progress on research today but I'm just trying to raise awareness of this disease by increasing traffic to the blog and spreading the word.

Edited: 02/06/2012